POS1447 “IF I HAVE SJÖGREN’S SYNDROME, I WANT TO KNOW IT AS EARLY AS POSSIBLE”: PERSPECTIVES OF FIRST-DEGREE RELATIVES OF PEOPLE WITH SJÖGREN’S SYNDROME FROM AN INTERNATIONAL SURVEY
Authors: A. Alunno, F. Carubbi, V. Ritschl, S. Zenz, A. Vieira, K. Antonopoulou, V. C Romão, M. J. Sousa Bandeira, M. Stradner
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> In recent years, rheumatology research focused on first-degree relatives of people with rheumatic diseases, mainly rheumatoid arthritis, since they have a higher risk of developing the disease compared with the general population and offer a potential source of insight into the preclinical phase of the disease. However, evidence on preclinical Sjögren's syndrome is still lacking. <h3>Objectives</h3> To explore the perspective of first-degree relatives of people with SS and inform the Pre-Sjögren's Syndrome Targeted Immunology Evaluation (PreSStige) study, conducted under the auspices of the EULAR Study Group on Sjögren's Syndrome (eSSential). <h3>Methods</h3> An online survey targeting first-degree relatives of people with SS was developed in English and translated into 11 languages (Italian, German, French, Spanish, Portuguese, Greek, Swedish, Finnish, Romanian, Norwegian and Maltese). The survey was launched on social media on December 15, 2022 and distributed via patient associations, forums, support groups, and in 3 Rheumatology participating centres (Austria, Italy and Portugal). Respondents without a diagnosis of SS were confronted with a scenario where they were offered a free rheumatology examination to assess whether they had symptoms suggestive of pSS. If so, they are advised to undergo additional exams (within a variable range of costs) to ascertain whether they have pSS. Surveys were accepted until January 10, 2023. <h3>Results</h3> Of 1064 people starting the survey, 677 respondents from 32 countries fulfilled the entry criteria (age &gt;18 years, being a first-degree relative of a person living with pSS). 90% of respondents were siblings, 7% were offspring, and 3% were parents of pSS patients. Respondents were mainly females (80%), aged 30-49 years (31%) and 50-70 years (38%). 155 (23%) of respondents already had a diagnosis of SS, while 119 (17%) had a diagnosis of other autoimmune diseases (AD) (23/119, 19% had more than one AD). When asked about their perceived risk of developing SS or another AD, several respondents did not feel to be at higher risk being first-degree relatives of affected people (Figure 1). When confronted with an hypothetical scenario, over half of the respondents without a diagnosis of pSS (N=522) mentioned feeling either worried, sad or scared about the possibility of being diagnosed with pSS. Nonetheless, the majority of them (86% of 522) were keen on accepting a preclinical rheumatology consultation, with the main reason for that being, "If I have pSS/other autoimmune diseases, I want to know it as early as possible" (82%). Conversely, those that would decline a free rheumatology examination mainly justified their decision based on the absence of symptoms suggestive of pSS (56%). Among respondents that would accept a free rheumatology consultation, 84% would proceed further and perform additional exams if advised by the rheumatologist based on the detection of symptoms/signs suggestive of pSS. As above, the main reason was the possibility of achieving an early diagnosis. The respondents that accepted the free rheumatology consultation but would not proceed further even if the rheumatologist would identify red flags for pSS mentioned the economic aspect as the main barrier (specifying they would accept performing additional exams if free of charge). <h3>Conclusion</h3> Our study explored, for the first time, the perspective of first-degree relatives of people with SS highlighting an overall willingness to undergo preclinical examinations for an early SS diagnosis. Economic challenges (namely, paying for diagnostic exams) have been identified as a barrier. The survey is still open and is being translated into additional languages to increase its reach.. The results of the survey will inform the next steps of the Pre-Sjögren's Syndrome Targeted Immunology Evaluation (PreSStige) study. <h3>Acknowledgements</h3> The authors are grateful to the individuals and patient associations who supported this project and helped with the translation and distribution of the survey. <h3>Disclosure of Interests</h3> None Declared.